survey

Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”

If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and the results were just released last week. Below, read what David had to share about the inspiration behind his novel, his thoughts on online communities like PatientsLikeMe and the intertwined future of marijuana and medicine.   What inspired you to write “Stoned: A Doctor’s Case for Medical Marijuana?” A patient – a retired English professor – who came to me for help in managing symptoms of advanced cancer. She asked me whether medical marijuana might help her. I started to give her my stock answer: that marijuana is an illegal drug, that it doesn’t have any proven medical benefits, etc. But she pushed me to be specific, in much the same way that she probably used to push her students. Eventually I admitted that I didn’t know, but that I’d find out. I then learned of the use of cannabinoids like cannabidiol for pain, obesity, …

Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana” Read More »

Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use. PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.” Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three …

Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana Read More »

What do you know about getting enough sleep?

That’s what the National Sleep Foundation (NSF) is asking during Sleep Awareness Week to help everyone better understand why sleep matters. And what you know probably depends on your own experiences. Are you living with insomnia or a chronic condition that impacts your sleep? Or do you just have a restless night every once in a while? Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we shared what the community helped to uncover (get it!?) in a series of infographics on the blog. Nearly a third of respondents never (5%) or rarely (25%) got a good night’s sleep, and almost half (44%) frequently woke up during the night. Poor sleep is the norm for people living with life-changing health conditions, and it affects everything from driving to relationships and sex – view the infographics here. To help launch Sleep Awareness Week, the NSF released their “Sleep in America” poll results today, including the 2015 Sleep and Pain survey, which looked to find if stress and poor health were related to shorter sleep durations and lower quality sleep. The poll found that: Greater stress was associated with less sleep and worse sleep …

What do you know about getting enough sleep? Read More »

Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen. Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to …

Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results Read More »

Patients as Partners: Managing High Blood Pressure questionnaire results

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease. Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be. From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s …

Patients as Partners: Managing High Blood Pressure questionnaire results Read More »

Uncovering psoriasis with patients like you

This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more. Here’s a sneak peek: Summer facts What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants. You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with …

Uncovering psoriasis with patients like you Read More »

Scroll to Top